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I am very new to this forum, but not to biomedical issues in autism. I have two boys ages 15 and 12 that have autism, and I suspect PANDAS in both.

 

My youngest is responding incredibly well to Amoxicillin. We have an appointement with a Lyme specialist who also is familiar with PANDAS, so I am hoping to get more answers very soon. And ofcourse this forum is a GOD SEND!

 

But my question is: how many other kids here go bezerk on dyes, especially red dye? My oldest is fine with it, he shows no change in behavior at all. He doesn't get much, but if by chance he gets a red Gatorade or a red candy every once in a while, there is no problem. My youngest son on the other hand, will go completely bonkers. I might as well hand him a crack pipe and a bottle of beer! I can't imagine those two effecting him worse. :blink:

 

I have noticed a few posts mentioning dyes, and I know most parents avoid them because of the link to health problems, but does anyone else have a kid like mine that absolutely goes crazy on the stuff? He also reacts this way to to foods naturally red/high phenol foods, all sugars but especially High Fructose Corn Syrup, fruits, vinegars, casein and many more. But Red Dye is on the top of the list of offenders. I wonder how this ties into PANDAS and if these reactions might get better with treating PANDAS.

 

He had a few mild food enfractions recently when he was about a month into a course of Amoxicillin. He had no reaction at all! A few days later he finished his prescription and had another food infraction - this time he raged and was very violent. I had never, ever seen him that bad. After that I convinced his doctor to refill his prescription for Amox.

 

 

So I hestitate to even dream that these food reactions might lessen with treatment, but oh how wonderful would that be???

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Hi

if you take a look at the TS/tics forum here you will find many posts documenting the harmful effects of artificial (chemical) food additives including dyes/coloring, flavoring, sweeteners etc

 

my son does not have PANDAS but does have Tourette syndrome, and these additives were one of the very first tic/OCD triggers that we identified in him

 

there is another thread here on the PANDAS forum recently discussing red40

http://www.latitudes...?showtopic=9828

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As a family we stay away from all food colorings, high fructose corn syrup and excess sugar along with any artificial sugars. With that said, when my son had food sensitivity testing done 18 months ago, my son showed a "moderate" reaction to Aspartame and Brilliant Black. He showed "mild" reaction to Blue #1, Red #1 and Yellow #6. I have no idea how to decipher which number color is in what so we just stay clear of all of them. My son's tics and anxieties will increase if he has any of these ingredients or if he has excess sugar (we learned the hard way with a Dunkin Donuts blueberry muffin one time on vacation :wacko: )

 

Although it would be nice if at some point we don't need to worry about reactions to food, we have come to eat this way as a family so I can't imagine letting the "ickies" back into our life!

 

 

 

 

I have noticed a few posts mentioning dyes, and I know most parents avoid them because of the link to health problems, but does anyone else have a kid like mine that absolutely goes crazy on the stuff? He also reacts this way to to foods naturally red/high phenol foods, all sugars but especially High Fructose Corn Syrup, fruits, vinegars, casein and many more. But Red Dye is on the top of the list of offenders. I wonder how this ties into PANDAS and if these reactions might get better with treating PANDAS.

 

He had a few mild food enfractions recently when he was about a month into a course of Amoxicillin. He had no reaction at all! A few days later he finished his prescription and had another food infraction - this time he raged and was very violent. I had never, ever seen him that bad. After that I convinced his doctor to refill his prescription for Amox.

 

So I hestitate to even dream that these food reactions might lessen with treatment, but oh how wonderful would that be???

Edited by justinekno

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Red dye (and later yellow) was the first harbinger of what was to come for us. It causes SEVERE and immediate (and prolonged) aggression in my daughter. We have done the Feingold diet with great success and are now able to eat some previously "trigger" foods (such as apples) post IVIG and since we have gone gluten- and sugar-free and are doing nutritional response therapy.

 

I have a food blog too if you would like more info about the diet we have finally worked out that suits her best.

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Thanks, I would love to see your food blog!

 

Red dye (and later yellow) was the first harbinger of what was to come for us. It causes SEVERE and immediate (and prolonged) aggression in my daughter. We have done the Feingold diet with great success and are now able to eat some previously "trigger" foods (such as apples) post IVIG and since we have gone gluten- and sugar-free and are doing nutritional response therapy.

 

I have a food blog too if you would like more info about the diet we have finally worked out that suits her best.

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My dd (her brother has been daignosed with PANDAS and we are begining to suspect her) also becomes very aggresive with red dye. Carmel coloring also effects her but to a lesser degree. When she was a toddler she would reflux after having the colorings to the point she would vomit. We avoided them until she had some without us knowing and had no vomitting. It took us a while to realize that even though she was no longer vomitting they were effecting her behavior.

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If a product say's "all natural" does that mean it contains no dyes? I'm amazed of all the products that have Red 40. Yesterday, I looked at my daughter's Jello (green & orange) and it has Red 40 in it.

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We suspect my son has PANDAS and also he had numerous food sensitvities (colors, gluten, casein, corn, soy, etc)which would affect his behavior. I was wondering if there is a higher incidence of food sensitivities amongst PANDAS children.

Edited by aidan'smom

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Red food dye is the worst! In fact, many artificial food colorings have been banned by some European countries. They use natural food colorings in their factories in Europe and artificial, cheaper colors in foods that are sold here. Unbelievable but true. The Feingold website has more information on it. Many ADHD kids see their symptoms lessen with elimination of artificial colors, mine included. It makes birthday parties and Halloween difficult, but my kids know that they can trade in treats for cash or substitute candy.

 

 

I am very new to this forum, but not to biomedical issues in autism. I have two boys ages 15 and 12 that have autism, and I suspect PANDAS in both.

 

My youngest is responding incredibly well to Amoxicillin. We have an appointement with a Lyme specialist who also is familiar with PANDAS, so I am hoping to get more answers very soon. And ofcourse this forum is a GOD SEND!

 

But my question is: how many other kids here go bezerk on dyes, especially red dye? My oldest is fine with it, he shows no change in behavior at all. He doesn't get much, but if by chance he gets a red Gatorade or a red candy every once in a while, there is no problem. My youngest son on the other hand, will go completely bonkers. I might as well hand him a crack pipe and a bottle of beer! I can't imagine those two effecting him worse. :blink:

 

I have noticed a few posts mentioning dyes, and I know most parents avoid them because of the link to health problems, but does anyone else have a kid like mine that absolutely goes crazy on the stuff? He also reacts this way to to foods naturally red/high phenol foods, all sugars but especially High Fructose Corn Syrup, fruits, vinegars, casein and many more. But Red Dye is on the top of the list of offenders. I wonder how this ties into PANDAS and if these reactions might get better with treating PANDAS.

 

He had a few mild food enfractions recently when he was about a month into a course of Amoxicillin. He had no reaction at all! A few days later he finished his prescription and had another food infraction - this time he raged and was very violent. I had never, ever seen him that bad. After that I convinced his doctor to refill his prescription for Amox.

 

 

So I hestitate to even dream that these food reactions might lessen with treatment, but oh how wonderful would that be???

Edited by sweetpeamom

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We saw the red 40 connection in my ds6 WELL before we knew anything about PANDAS. It was impossible to miss. My husband and I also feel nasty if we have too much (like if I have a giant cherry soda...ugh). I understand that it has now been withdrawn from the market in many countries.

 

I've never seen my ds4 to react to dyes, but we try to minimize them just to be safe.

 

I did notice that after the high-dose IVIG we had in April, ds6 stopped reacting to stuff even when he did get some. Now, though, I'm wondering if he might be a little more reactive again. Haven't seen any rages, extreme defiance, or anything like we saw before, just sometimes he seems a bit "unwell" after eating e.g. brightly colored birthday cake or soda at a party, and he doesn't look quite right under the eyes for a few hours. I confess that I am hypervigilant at this point, though, so I might be seeing things that are happening in all of the other kids too, but that other mothers might not make anything of. In any case, he knows not to eat red so it comes up only rarely. We haven't noticed associations with other dyes.

 

Incidentally, I was reading a book chapter on allergies once as part of my immunology studies a while back, and one of the last sentences in the chapter had something about how kids with extremely high IQ's tend to react very badly to Red 40. I tried to find a published reference for that afterwards but couldn't.

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Red dye was the first thing I realized was a trigger for my son's tics. It also makes him more hyper & impulsive. He's really good about avoiding it. I wish he'd be as careful with other artificial colors as well.

 

Caffeine is another obvious trigger for him & he is practically manic for a bit, talking & moving at 100 mph, then crashes.

 

I also notice that after a weekend of camping or vacation where we are more lax about letting him have some junk, there is a definite period of about 3 days for him to detox. The first he will be touchy & emotional, the 2nd he will just be tired & often will complain of a headache. By about day 3 he seems to be almost back to normal. I noticed after this last weekend, he was also experiencing more OCD as well. He tends to be rather hypoglycemic & sensitive to sugary foods, but I suspect that HFCS is our biggest culprit.

 

The older he gets (he's 10 1/2), the harder it is to control what goes into his mouth. We talk about it a lot, and he tries, but sometimes he just wants to eat the crap & deal with the after effects, & sometimes he just doesn't realize he has eaten something that is going to cause a reaction, and sometimes there isn't much of an alternative if we didn't plan ahead.

 

I had to laugh this past weekend though. We were staying at a cabin without a coffee maker. By day 3 I was having a caffeine withdrawal headache that was pretty bad. Finally he suggested I drink a caffeinated soda. He went to the fridge & came back with a Dr. Pepper that was made with sucrose instead of HFCS. My BIL asked why he didn't get me a Diet Coke or regular Coke because they would have more caffeine. DS looked & him & said, "Oh, this is made with real sugar though. It is waayyy healthier". Of course BIL had a good laugh at the idea of real sugar being a health food! :) We of course talked about soda in general being NOT healthy at all, & the fact that I was having withdrawals was a sign that I should cut back on my caffeine intake as well. But I had to give him credit for thinking about which would have the least amount of things on the "bad" list.

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Yes, our son also reacts to red dye. Other than an illness, I would say it is one of his worst triggers. He is aware of it now and stays away from the non-natural red foods.

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Yes, we have seen a very strong correlation between high phenol foods (mainly non-organic tomato ketchup) and the onset of ds11's severe rages, so we've started him on the TriEnza enzyme product (6 days, so far so good). I read that phenols build up in the body if the needed enzymes are not present to eliminate them normally. I don't know much about red dyes, but I found a web site about phenols and salicylates. Apparently, artificial dyes used in the U.S. are made from petroleum(?!). I need to do more research.

 

What interested my about this post was the note that Red #40 might affect high IQ kids more than others. My son was reading before the age of three (the first thing he read was "Divided highway ends"), and he's always showed signs of being gifted/high IQ. Just another piece of the puzzle, I suppose.

 

Sorry to have resurrected this earlier post, but I've only just returned to the forum in the past few days. I got REALLY discouraged when we went to a PANDAS doctor who doesn't think ds11 has PANDAS, and I've tried to find energy to start this all again. Why does ds11 have so much in common with diagnosed PANDAS kids if he doesn't have PANDAS? It's hard to keep reading about ds11's similarities with diagnosed PANDAS kids when our PANDAS doctor doesn't consider this information relevant. Finding another doctor feels really overwhelming right now, but I guess I don't have much choice. This doctor knows about PANDAS, but he's only treated a few kids with textbook presentation.

 

All I know is I miss my son so much. I don't want to do this anymore. I want him to be well. I want our lives back, but I don't know how to get them back.

 

SearchingMom

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When my son is in exacerbation, he has a very strong reaction to food coloring - especially blue. It is better now that he is in remission. When it is a problem, we used gastrocrom when we saw sudden symptoms we attributed to food. it seemed to work!

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